Re: Prednisone - side effects

[Guest guest]

,,,,YES.. I take sleep aids

because my form of PF (NSIP) is

responsive to prednisone and I have been stable for 4 years. I use

Lunesta every night!

Without it my head is on 24/7.

Z fibriotic NSIP/05

Z 65, fibriotic NSIP/05/PA

And

“mild” PH/10/07 and Reynaud’s too!!

No,

NSIP was not self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to Darah and Sara

“I’m

gonna be iron like a lion in Zion” Bob Marley

Vinca

Minor-periwinkle is my flower

lisac_wa wrote:

not for six weeks though! Do any of you take sleep aids. I'm just

afraid of what the lack of sleep will eventually to do my mental

capacities and working.

Subject: Prednisone - side effects

To: Breathe-Support

Date: Tuesday, July 21, 2009, 9:53 AM

Good morning,

I've been on 40mg prednisone for over a week now and didn't mind how it

made me feel, like I was well again! But what are we supposed to do

about sleep?

Thanks,

C 53 IPF 5/09

--- End forwarded message ---

[Guest guest]

Yes , I take Ambian 10 mg every night. and have for 10 years or so. But with the prednisone went for very long periods that nothing helped.It did effect my concentration and ability to do much. So talk to your Dr. I am sure he should give you something to help.( by the way I have never had a problem sleep walking or eating in the middle of the night like they are showing on TV) so crazy. Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up. ,,,,YES.. I take sleep aids because my form of PF (NSIP) is responsive to prednisone and I have been stable for 4 years. I use Lunesta every night! Without it my head is on 24/7. Z 65, fibriotic NSIP/05/PA And “mild” PH/10/07 and Reynaud’s too!!No, NSIP was not self-inflicted…I never smoked!Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob MarleyVinca Minor-periwinkle is my flower lisac_wa wrote: not for six weeks though! Do any of you take sleep aids. I'm just afraid of what the lack of sleep will eventually to do my mental capacities and working. Subject: Prednisone - side effects To: Breathe-Support Date: Tuesday, July 21, 2009, 9:53 AM Good morning, I've been on 40mg prednisone for over a week now and didn't mind how it made me feel, like I was well again! But what are we supposed to do about sleep? Thanks, C 53 IPF 5/09 --- End forwarded message ---

[Guest guest]

The sleep deprivation not the ambian..lol Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up. Yes , I take Ambian 10 mg every night. and have for 10 years or so. But with the prednisone went for very long periods that nothing helped.It did effect my concentration and ability to do much. So talk to your Dr. I am sure he should give you something to help.( by the way I have never had a problem sleep walking or eating in the middle of the night like they are showing on TV) so crazy. Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up.<pastedGraphic.tiff> ,,,,YES.. I take sleep aids because my form of PF (NSIP) is responsive to prednisone and I have been stable for 4 years. I use Lunesta every night! Without it my head is on 24/7. Z 65, fibriotic NSIP/05/PA And “mild” PH/10/07 and Reynaud’s too!!No, NSIP was not self-inflicted…I never smoked!Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob MarleyVinca Minor-periwinkle is my flower lisac_wa wrote: not for six weeks though! Do any of you take sleep aids. I'm just afraid of what the lack of sleep will eventually to do my mental capacities and working. Subject: Prednisone - side effects To: Breathe-Support Date: Tuesday, July 21, 2009, 9:53 AM Good morning, I've been on 40mg prednisone for over a week now and didn't mind how it made me feel, like I was well again! But what are we supposed to do about sleep? Thanks, C 53 IPF 5/09 --- End forwarded message ---

[Guest guest]

,

Many of us have had to take something to help us sleep especially when we were on high doses of prednisone. Ask your doctor about this. It's a very common side effect with prednisone.

Leanne Storch from the Pulmonary Fibrosis Foundation always says prednisone is the worst drug and the best drug all at the same time. I has not been shown to help most people with IPF but there are some who are helped. Not many but some. Some doctors feel it's worth a short trial of prednisone to see if your disease responds to it. It sounds like your doctor has taken this course with you. It strikes me as reasonable.

Prednisone is one of those things that inspires very strong feelings. If it doesn't help and someone has a lot of side effects it is extremely frustrating and they feel very negatively towards it.

On the other hand someone like me tells a very different story. I don't have IPF, I have NSIP a form of pulmonary fibrosis that is more often helped by prednisone. During my initial hospitalization I was on high iv doses of solumedrol and then once home was on up to 100 mg a day of prednisone orally. It saved my life. I'm here today because my doctor used prednisone. I had every lousy side effect in the book but my doctor was aggressive in helping me manage them and I coped as best I could. I was on pred from June 2006 through February of 2007 and have been off of it since then. I've stayed stable since then. I would not hesitate to take it again should circumstances warrant it.

This brings me to a question for you. How was your diagnosis arrived at? You've said it's IPF with minimal inflammation and I'm just curious. Have you had a biopsy? Or is this from ct scans? Have they tested you for connective tissue disease or hypersensitivity pneumonitis? All of these things will affect your treatment and the drugs chosen. If you haven't been evaluated at a university medical center with an ILD department, please consider it. The average community based pulmo just does not see enough PF to be able to treat it knowledgably. You can get information on 22 such hospitals at www.ipfnet.org. Many of us here go to these centers. Please ask any questions you want or need to!!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Tuesday, July 21, 2009 12:35:59 PMSubject: Fwd: Re: Prednisone - side effects

not for six weeks though! Do any of you take sleep aids. I'm just afraid of what the lack of sleep will eventually to do my mental capacities and working.From: lisac_wa <hope2thend@ ...>Subject: Prednisone - side effectsTo: Breathe-Support@ yahoogroups. comDate: Tuesday,

July 21, 2009, 9:53 AM Good morning,I've been on 40mg prednisone for over a week now and didn't mind how it made me feel, like I was well again! But what are we supposed to do about sleep? Thanks,C 53 IPF 5/09--- End forwarded message ---

[Guest guest]



Boy, I took Ambian and not only sleep walked I was found walking down the road "looking at Aliens". I did not sleep eat..I just had adventures on it. LOL Joyce Rudy AZ birds

Prednisone - side effectsTo: Breathe-Support Date: Tuesday, July 21, 2009, 9:53 AM Good morning,I've been on 40mg prednisone for over a week now and didn't mind how it made me feel, like I was well again! But what are we supposed to do about sleep? Thanks,C 53 IPF 5/09--- End forwarded message ---

[Guest guest]

Joyce,

That reminds me.... a friend of mine took Ambien a few times and then decided not to take it anymore. She woke up one night at 3 in the morning, she had taken her two dogs out for a walk in the middle Greenwich Village in Manhattan. Another night she took it and woke up the next morning in her bathtub wearing most of the clothing from her closet.

Most people do fine on Ambien but some have some really intense sleepwalking experiences on it. Weird huh?

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Tuesday, July 21, 2009 6:01:20 PMSubject: Re: Prednisone - side effects



Boy, I took Ambian and not only sleep walked I was found walking down the road "looking at Aliens". I did not sleep eat..I just had adventures on it. LOL Joyce Rudy AZ birds

Prednisone - side effectsTo: Breathe-Support@ yahoogroups. comDate: Tuesday, July 21, 2009, 9:53 AM Good morning,I've been on 40mg prednisone for over a week now and didn't mind how it made me feel, like I was well again! But what are we supposed to do about sleep? Thanks,C 53 IPF 5/09--- End forwarded message ---

[Guest guest]

Every psychiatric med and sleep med I know has severe side effects in

some people while helping others greatly. I've tried enough to

experience many of those side effects. For that reason, I caution all to

proceed carefully and with good medical supervision and support. Also,

if it has such a side effect don't fight the point and hope it won't

happen again as Beth's friend did. There are too many other

alternatives to try. I take Ambien CR as Ambien doesn't work for me. I

do ok with it. But I tried many others with all sorts of side effects.

So, just be cautious until the right med for you is discovered.

> >>

> >>From: lisac_wa <hope2thend@ ...>

> >>Subject: Prednisone - side effects

> >>To: Breathe-Support@ yahoogroups. com

> >>Date: Tuesday, July 21, 2009, 9:53 AM

> >>

> >>Â

> >>

> >>Good morning,

> >>I've been on 40mg prednisone for over a week now and didn't mind how

it made me feel, like I was well again! But what are we supposed to do

about sleep?

> >>

> >>Thanks,

> >>C 53 IPF 5/09

> >>

> >>--- End forwarded message ---

> >>

> >>

> >

> >

> >

>

[Guest guest]

lisa

i started onall 3

still on nac and pred

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Prednisone - side effectsTo: Breathe-Support Date: Tuesday, July 21, 2009, 12:46 PM

Thanks Peggy. My doc said he wanted to try me on the predisone becausehe said it works for some and not for others. He said more than likelyhe will take me off of it after six weeks. My bronchoscopy resultsshowed mild inflammation. He thought it might help with the cough, butit doesn't. The other two meds he put me on are Azathioprine andAcetylcystein, which he said take about 6-8 weeks to start working. Somaybe the prednisone is just until those kick-in. Are you familiar withthese other two meds? He feels positive they are going to STOP thegrowth of the cells from scarring anymore.I'm scare of the weight gain, but even more concerned about the loss ofsleep and what that's going to do to me over the next few weeks.C _ IPF 5/09>> Good morning,> I've been on 40mg prednisone for over a week now and didn't mind how> it made me feel, like I was well again! But what are we supposed to> do about sleep?>> Thanks,> C 53 IPF 5/09>

[Guest guest]

Just to reinforce, and perhaps by doing so reassure, the notion that we are all

different, and thus react differently to medications - I was on prednisone for

about 6 months and during that time had no issues with sleep or weight gain. In

fact, while still on the prednisone, I managed to lose 15 of the 35 pounds that

I need to lose to be listed for transplant. Ironically, after being weaned off

of the prednisone, I hit a plateau in my weight loss!!!

I realize that I was lucky, and maybe my reactions to the drug were highly

unusual, but nevertheless they do show that the presence of side effects varies

from person to person.

Steve aka Knip IPF/UIP 9/07 VATS 12/07

57 Plymouth, NH

> >

> > Good morning,

> > I've been on 40mg prednisone for over a week now and didn't mind how

> > it made me feel, like I was well again! But what are we supposed to

> > do about sleep?

> >

> > Thanks,

> > C 53 IPF 5/09

> >

>